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Abstract Background Physical function is an important indicator of physical health and predicts mortality. This study identified characteristics associated with limitations in Medicare recipients' activities of daily living. Methods 2019 Consumer Assessment of Healthcare Providers and Systems Fee-for-Service Medicare Survey data: 79,725 respondents (34% response rate) who were 65 and older and 53% female; 7% Black, 5% Hispanic, 4% Asian American, Native Hawaiian, or other Pacific Islander, 2% Multiracial, 1% American Indian/Alaskan Native; 35% with high school education or less. Walking, getting in and out of chairs, bathing, dressing, toileting, and eating (scored as having no difficulty versus being able to do with difficulty or unable to do) and a scale of these items were regressed on patient characteristics. Results After adjustment for all characteristics, function limitations were found for those who smoked (effect sizes of significant associations range .04-.13), had chronic health conditions (.02-.33), were 85 years or older (.09-.46), needed assistance completing the survey (.32–1.29), were female (.05-.07), and had low income and assets (.15-.47). Conclusions These nationally representative U.S. estimates of physical function characteristics are useful for interventions for vulnerable population subgroups.

BackgroundResearchers have many options for web-based survey data collection, ranging from access to curated probability-based panels, where individuals are selectively invited to join based on their membership in a representative population, to convenience panels, which are open for anyone to join. The mix of respondents available also varies greatly regarding representation of a population of interest and in motivation to provide thoughtful and accurate responses. Despite the additional dataset-building labor required of the researcher, convenience panels are much less expensive than probability-based panels. However, it is important to understand what may be given up regarding data quality for those cost savings. ObjectiveThis study examined the relative costs and data quality of fielding equivalent surveys on Amazon’s Mechanical Turk (MTurk), a convenience panel, and KnowledgePanel, a nationally representative probability-based panel. MethodsWe administered the same survey measures to MTurk (in 2021) and KnowledgePanel (in 2022) members. We applied several recommended quality assurance steps to enhance the data quality achieved using MTurk. Ipsos, the owner of KnowledgePanel, followed their usual (industry standard) protocols. The survey was designed to support psychometric analyses and included >60 items from the Patient-Reported Outcomes Measurement Information System (PROMIS), demographics, and a list of health conditions. We used 2 fake conditions (“syndomitis” and “chekalism”) to identify those more likely to be honest respondents. We examined the quality of each platform’s data using several recommended metrics (eg, consistency, reliability, representativeness, missing data, and correlations) including and excluding those respondents who had endorsed a fake condition and examined the impact of weighting on representativeness. ResultsWe found that prescreening in the MTurk sample (removing those who endorsed a fake health condition) improved data quality but KnowledgePanel data quality generally remained superior. While MTurk’s unweighted point estimates for demographics exhibited the usual mismatch with national averages (younger, better educated, and lower income), weighted MTurk data matched national estimates. KnowledgePanel’s point estimates better matched national benchmarks even before poststratification weighting. Correlations between PROMIS measures and age and income were similar in MTurk and KnowledgePanel; the mean absolute value of the difference between each platform’s 137 correlations was 0.06, and 92% were

Completing self-administered patient experience surveys is challenging for many patients. We randomized adult patients receiving care from an urban safety net provider to complete the Consumer Assessment of Healthcare Providers and Systems (CAHPS ® ) Clinician and Group Survey 3.1 (CG-CAHPS 3.1), or an “EZ” survey created using plain language principles. We compared response rates, item missingness, item-scale correlations, and reliability of patient experience scores based on 264 completed surveys (64% female, 66% Hispanic, 33% high school education or less). The CG-CAHPS 3.1 survey response rate was higher (20% vs 16%), and failure to follow skip instructions was more common for the EZ survey. Internal consistency reliability for multi-item scales was similar, but provider-level reliability was higher for the EZ than for the CG-CAHPS 3.1 survey measures. Cognitive interviews with patients are needed to assess whether the wording of the EZ survey is responsible for the lower response rates and more skip pattern errors. Future studies are also required to provide additional information about the psychometric properties of the CG-CAHPS 3.1 and EZ surveys.

BackgroundSurveys of internet panels such as Amazon’s Mechanical Turk (MTurk) are common in health research. Nonresponse in longitudinal studies can limit inferences about change over time. ObjectiveThis study aimed to (1) describe the patterns of survey responses and nonresponse among MTurk members with back pain, (2) identify factors associated with survey response over time, (3) assess the impact of nonresponse on sample characteristics, and (4) assess how well inverse probability weighting can account for differences in sample composition. MethodsWe surveyed adult MTurk workers who identified as having back pain. We report participation trends over 3 survey waves and use stepwise logistic regression to identify factors related to survey participation in successive waves. ResultsA total of 1678 adults participated in wave 1. Of those, 983 (59%) participated in wave 2 and 703 (42%) in wave 3. Participants who did not drop out took less time to complete previous surveys (30 min vs 35 min in wave 1, P

Purpose: Patient experience is a key aspect of care quality. The Consumer Assessment of Healthcare Providers and Systems Clinician and Group (CG-CAHPS®) survey measures experiences with ambulatory care providers to inform public reporting, pay-for-performance initiatives, interventions, patient choice of physicians/practices, and quality improvement. Since the survey’s 2007 release, no systematic review of its use in research has been published. Methods: We reviewed English-language, peer-reviewed articles published since 2008 using CG-CAHPS survey data in the U.S. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and used the Checklist for Analytical Cross-Sectional Studies. Results: We examined 126 articles and included 52. Twenty-seven articles focused on general primary care, and the others focused on ambulatory specialty care. Of the 52 studies, 37 were cross-sectional, and the majority conducted patient-level regression analysis, controlling for patient characteristics. The most-used CAHPS measures were overall provider rating and the provider communication composite. CG-CAHPS data were primarily utilized to evaluate interventions (24 studies) and examine cross-sectional associations (21 studies) of site-level (eg, organizational climate), provider-level (physician empathy), and patient-level (medication adherence) factors with patient experience. Four studies reported disparities in patient experience. Conclusions: The widespread use of CG-CAHPS data implies the survey’s value in measuring and improving care quality. Unlike facility or plan surveys, the CG-CAHPS survey was designed to allow attribution to medical groups and clinicians, which, as evidence shows, is its main strength. Policymakers, researchers, clinicians, and health care leaders can leverage CG-CAHPS data in quality improvement efforts and interventions supporting patient-centered care.

Abstract Background In contrast to prior research, our study presents longitudinal comparisons of the EQ-5D-5L and Patient-Reported Outcomes Measurement Information System (PROMIS) preference (PROPr) scores. This fills a gap in the literature, providing a much-needed understanding of these preference-based measures and their applications in healthcare research. Furthermore, our study provides equations to estimate one measure from the other, a tool that can significantly facilitate comparisons across studies. Methods We administered a health survey to 4,098 KnowledgePanel® members living in the United States. A subset of 1,256 (82% response rate) with back pain also completed the six-month follow-up survey. We then conducted thorough cross-sectional and longitudinal analyses of the two measures, including product-moment correlations between scores, associations with demographic variables, and health conditions. To estimate one measure from the other, we used ordinary least squares (OLS) regression with the baseline data from the general population. Results The correlation between the EQ-5D-5L and PROPr scores was 0.69, but the intraclass correlation was only 0.34 because the PROPr had lower (less positive) mean scores on the 0 (dead) to 1 (perfect health) continuum than the EQ-5D-5L. The associations between the two preference measures and demographic variables were similar at baseline. The product-moment correlation between unstandardized beta coefficients for each preference measure regressed on 22 health conditions was 0.86, reflecting similar patterns of unique associations. Correlations of change from baseline to 6 months in the two measures with retrospective perceptions of change were similar. Adjusted variance explained in OLS regressions predicting one measure from the other was 48%. On average, the predicted values were within a half-standard deviation of the observed EQ-5D-5L and PROPr scores. The beta-binomial regression model slightly improved over the OLS model in predicting the EQ-5D-5L from the PROPr but was equivalent to the OLS model in predicting the PROPr. Conclusion Despite substantial mean differences, the EQ-5D-5L and PROPr have similar cross-sectional and longitudinal associations with other variables. We provide the OLS regression equations for use in cost-effectiveness research and meta-analyses. Future studies are needed to compare these measures with different conditions and interventions to provide more information on their relative validity.

Patient experience is a key aspect of care quality. Since the 2007 release of the Consumer Assessment of Healthcare Providers and Systems Clinician and Group (CG-CAHPS) survey, no systematic review of factors associated with CG-CAHPS scores has been reported. We reviewed 52 peer-reviewed English language articles published in the United States using CG-CAHPS data. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines and used the Checklist for Analytical Cross-Sectional Studies. We identified several interventions (eg, adding a care coordinator focused on chronic care management) associated with improved overall provider rating and 2 interventions (eg, peer shadow coaching) that improved provider communication scores. Studies evaluating the implementation of patient-centered medical homes or patient-reported outcomes found mixed results. We identified site-level factors (eg, better team communication) and provider-level factors (eg, physician empathy) associated with better patient experience. In contrast, patient-level factors (eg, medication adherence) found mixed associations with patient experience. Policymakers, clinicians, and healthcare leaders can leverage this evidence for quality improvement efforts and interventions supporting patient-centered care.

Abstract Background The Patient-Reported Outcomes Measurement and Information System (PROMIS®) global health items (global-10) yield physical and mental health scale scores and the PROMIS-Preference (PROPr) scoring system estimated from PROMIS domain scores (e.g., PROMIS-29 + 2) produces a single score anchored by 0 (dead or as bad as being dead) to 1 (full health). A link between the PROMIS global-10 and the PROPr is needed. Methods The PROMIS-29 + 2 and the PROMIS global-10 were administered to 4102 adults in the Ipsos KnowledgePanel in 2022. The median age was 52 (range 18–94), 50% were female, 70% were non-Hispanic White, and 64% were married or living with a partner. The highest level of education completed for 26% of the sample was a high school degree or general education diploma and 44% worked full-time. We estimated correlations of the PROPr with the PROMIS global health items and the global physical and mental health scales. We examined the adjusted R2 and estimated correlations between predicted and observed PROPr scores. Results Product-moment correlations between the PROMIS global health items and the PROPr ranged from 0.50 to 0.63. The PROMIS global physical health and mental health scale scores correlated 0.74 and 0.60, respectively, with the PROPr. The adjusted R2 in the regression of the PROPr on the PROMIS global health items was 64%. The equated PROPr preference scores correlated (product-moment) 0.80 (n = 4043; p

Abstract Background There is a need to evaluate different options for estimating individual change in health-related quality of life for patients with low back pain. Methods Secondary analysis of data collected at baseline and 6 weeks later in a randomized trial of 749 adults with low back pain receiving usual medical care (UMC) or UMC plus chiropractic care at a small hospital at a military training site or two large military medical centers. The mean age was 31; 76% were male and 67% were White. The study participants completed the Patient-Reported Outcomes Measurement Information System (PROMIS®)-29 v 1.0 physical function, pain interference, pain intensity, fatigue, sleep disturbance, depression, anxiety, satisfaction with participation in social roles, physical summary, and mental health summary scores (T-scored with mean = 50 and standard deviation (SD) = 10 in the U.S. general population). Results Reliability estimates at the baseline ranged from 0.700 to 0.969. Six-week test–retest intraclass correlation estimates were substantially lower than these estimates: the median test–retest intraclass correlation for the two-way mixed-effects model was 0. 532. Restricting the test–retest reliability estimates to the subset who reported they were about the same as at baseline on a retrospective rating of change item increased the median test–retest reliability to 0.686. The amount of individual change that was statistically significant varied by how reliability was estimated, and which SD was used. The smallest change needed was found when internal consistency reliability and the SD at baseline were used. When these values were used, the amount of change needed to be statistically significant (p

Abstract Background In 2014, the National Institute of Health Pain Consortium’s research task force (RTF) on research standards for chronic low back pain (CLBP) proposed the Impact Stratification Score (ISS) as a patient-reported outcome measure that could stratify patients by the impact CLBP has on their lives. This work compares three newly developed ISS-based classifications to the RTF’s original to provide an optimal recommendation. Methods The online sample included 1226 individuals from Amazon’s Mechanical Turk who indicated having non-specific CLBP, average age of 40, 49% female, and 67% White. Participants completed the PROMIS-29 v2.1 profile survey that contains the 9 ISS items as well the Roland-Morris Disability Questionnaire (RMDQ) and Graded Chronic Pain Scale (GCPS). Other items included high-impact chronic pain; not working due to health problems; overall health; and number of healthcare visits for back pain in the past 6 months. Three new classifications were created using quartiles (Classification 2), latent profile analysis (Classification 3), and one modeled after the GCPS (Classification 4). Classifications were subsequently compared to the RTF-proposed classification (Classification 1) on several concurrent and prognostic criteria. Results Classification 1 had three CLBP severity groups, four in Classification 2, three in Classification 3, and four in Classification 4. All novel classifications improved upon the original. Classification 2 performed best at minimizing the classification of those with negative outcomes into the lowest severity groups at baseline (e.g., 11% with RMDQ ≥ 7) and 6 months (e.g., 8.2% had fair/poor health). Classification 4 performed best at maximizing classification of those with negative outcomes into the most severe group concurrently (e.g., 100% had GCPS grade ≥ 2) and at 6 months (e.g., 100% with RMDQ ≥ 7). Conclusions We developed three ISS-based classification schemes and tested them against several outcomes. All three improved upon the original scheme. While appearing more optimal than other classifications in the lowest severity groups, Classification 2 presents some considerations and limitations. Given that Classification 4 was an improvement at the lowest end of severity and was the best at the highest end, it is our tentative recommendation that this approach be adopted to classify individuals with non-specific CLBP.

ObjectivesSurveys can assist in screening oral diseases in populations to enhance the early detection of disease and intervention strategies for children in need. This paper aims to develop short forms of child-report and proxy-report survey screening instruments for active dental caries and urgent treatment needs in school-age children.MethodsThis cross-sectional study recruited 497 distinct dyads of children aged 8-17 and their parents between 2015 to 2019 from 14 dental clinics and private practices in Los Angeles County. We evaluated responses to 88 child-reported and 64 proxy-reported oral health questions to select and calibrate short forms using Item Response Theory. Seven classical Machine Learning algorithms were employed to predict children's active caries and urgent treatment needs using the short forms together with family demographic variables. The candidate algorithms include CatBoost, Logistic Regression, K-Nearest Neighbors (KNN), Naïve Bayes, Neural Network, Random Forest, and Support Vector Machine. Predictive performance was assessed using repeated 5-fold nested cross-validations.ResultsWe developed and calibrated four ten-item short forms. Naïve Bayes outperformed other algorithms with the highest median of cross-validated area under the ROC curve. The means of best testing sensitivities and specificities using both child-reported and proxy-reported responses were 0.84 and 0.30 for active caries, and 0.81 and 0.31 for urgent treatment needs respectively. Models incorporating both response types showed a slightly higher predictive accuracy than those relying on either child-reported or proxy-reported responses.ConclusionsThe combination of Item Response Theory and Machine Learning algorithms yielded potentially useful screening instruments for both active caries and urgent treatment needs of children. The survey screening approach is relatively cost-effective and convenient when dealing with oral health assessment in large populations. Future studies are needed to further leverage the customize and refine the instruments based on the estimated item characteristics for specific subgroups of the populations to enhance predictive accuracy.

Abstract Adjuvant chemotherapy improves breast cancer survival but is associated with bothersome short- and long-term toxicity. Factors associated with toxicity, especially subacute toxicity up to 2 years following chemotherapy, have not been fully elucidated. The NRG Oncology/NSABP B-30 clinical trial compared 3 different doxorubicin-, cyclophosphamide-, and docetaxel-based chemotherapy regimens given over 3–6 months. Patients with hormone receptor-positive breast cancer received subsequent adjuvant endocrine therapy. From baseline through 24 months, 2156 patients completed questionnaires serially. We used multivariable probabilistic index models to identify factors associated with acute (>0–12 months) and subacute (>12–24 months) difficulties with pain, cognition, vasomotor symptoms, and vaginal symptoms. For all symptom domains, presence of symptoms prior to chemotherapy initiation were associated with symptoms in the subacute period (all p

BackgroundResearchers have implemented multiple approaches to increase data quality from existing web-based panels such as Amazon’s Mechanical Turk (MTurk). ObjectiveThis study extends prior work by examining improvements in data quality and effects on mean estimates of health status by excluding respondents who endorse 1 or both of 2 fake health conditions (“Syndomitis” and “Chekalism”). MethodsSurvey data were collected in 2021 at baseline and 3 months later from MTurk study participants, aged 18 years or older, with an internet protocol address in the United States, and who had completed a minimum of 500 previous MTurk “human intelligence tasks.” We included questions about demographic characteristics, health conditions (including the 2 fake conditions), and the Patient Reported Outcomes Measurement Information System (PROMIS)-29+2 (version 2.1) preference–based score survey. The 3-month follow-up survey was only administered to those who reported having back pain and did not endorse a fake condition at baseline. ResultsIn total, 15% (996/6832) of the sample endorsed at least 1 of the 2 fake conditions at baseline. Those who endorsed a fake condition at baseline were more likely to identify as male, non-White, younger, report more health conditions, and take longer to complete the survey than those who did not endorse a fake condition. They also had substantially lower internal consistency reliability on the PROMIS-29+2 scales than those who did not endorse a fake condition: physical function (0.69 vs 0.89), pain interference (0.80 vs 0.94), fatigue (0.80 vs 0.92), depression (0.78 vs 0.92), anxiety (0.78 vs 0.90), sleep disturbance (−0.27 vs 0.84), ability to participate in social roles and activities (0.77 vs 0.92), and cognitive function (0.65 vs 0.77). The lack of reliability of the sleep disturbance scale for those endorsing a fake condition was because it includes both positively and negatively worded items. Those who reported a fake condition reported significantly worse self-reported health scores (except for sleep disturbance) than those who did not endorse a fake condition. Excluding those who endorsed a fake condition improved the overall mean PROMIS-29+2 (version 2.1) T-scores by 1-2 points and the PROMIS preference–based score by 0.04. Although they did not endorse a fake condition at baseline, 6% (n=59) of them endorsed at least 1 of them on the 3-month survey and they had lower PROMIS-29+2 score internal consistency reliability and worse mean scores on the 3-month survey than those who did not report having a fake condition. Based on these results, we estimate that 25% (1708/6832) of the MTurk respondents provided careless or dishonest responses. ConclusionsThis study provides evidence that asking about fake health conditions can help to screen out respondents who may be dishonest or careless. We recommend this approach be used routinely in samples of members of MTurk.

Abstract Background In 2014, the National Institute of Health Pain Consortium’s research task force on research standards for chronic low back pain (CLBP) proposed a measure that could be used to stratify patients by the impact CLBP has on their lives, namely the Impact Stratification Score (ISS). This study examines the dimensionality of the ISS and support for its single total score, and evaluates its overall psychometric properties. Methods The sample included 1677 chiropractic patients being treated for CLBP and chronic neck pain, had an average age of 49, 71% female, and 90% White. Study participants completed the PROMIS-29 v2.1 profile survey that contains the 9 ISS items. The ISS was evaluated using item-total correlations, Cronbach’s alpha, factor analysis (i.e., correlated factors and bifactor models), and item response theory (IRT). Reliability indices and item properties were evaluated from bifactor and IRT models, respectively. Results Item-total correlations were high (0.64–0.84) with a Cronbach’s alpha of 0.93. Eigenvalues suggested the possibility of two factors corresponding to physical function and pain interference/intensity. Bifactor model results indicated that data were essentially unidimensional, primarily reflecting one general construct (i.e., impact) and that after accounting for ‘impact’ very little reliable variance remained in the two group factors. General impact scores were reliable (omegaH = .73). IRT models showed that items were strong indicators of impact and provided information across a wide range of the impact continuum and offer the possibility of a shorter 8-item ISS. Finally, it appears that different aspects of pain interference occur prior to losses in physical function. Conclusions This study presents evidence that the ISS is sufficiently unidimensional, covers a range of chronic pain impact and is a reliable measure. Insights are obtained into the sequence of chronic pain impacts on patients’ lives.

Background and Objective Obstructive sleep apnea (OSA) is a highly prevalent disorder that disparately affects racial/ethnic minorities. OSA functional health literacy can contribute to health disparities. Documenting poor OSA functional health literacy is needed to inform research agendas, policy, and advocacy efforts. The objective of this study is to develop a scale for measuring OSA functional health literacy among diverse audiences and a variety of reading levels and to ascertain its reliability and validity. Methods Development of the 18-item Survey of OSA Functional Health Literacy (SOFHL) was guided by literature review and input from experts. A convenience sample of persons enrolled in a clinical trial completed the survey (n = 194). Factor analysis was used to identify the number of dimensions in the SOFHL and their relationship to other domains that are relevant to OSA functional health literacy. Internal consistency reliability (alpha) was estimated for the SOFHL scales and correlations with educational attainment and income computed. Results All respondents were Black and 29% reported average household income less than $10000 USD. Confirmatory factor analysis provided support for two dimensions: OSA general knowledge (alpha = 0.81) and OSA self-management efficacy (alpha = 0.71). OSA general knowledge was significantly correlated with education (r = 0.41) and income (r = 0.21), and OSA self-management efficacy was significantly correlated with education (r = 0.19) and less depression (r = -0.18). Conclusions Higher educational attainment and socioeconomic status were associated with better OSA functional health literacy. These results provide preliminary support for the SOFHL, a measure that can be used to assess OSA functional health literacy.

Abstract Background Differences in experiences of care reported by Asian Americans (Asians) compared to non-Hispanic Whites (Whites) may be due to lack of measurement invariance. Methods We evaluated the three-factor structure and the equivalence of responses to the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinical and Group (CG-CAHPS) Adult Visit Survey 1.0 and compared care experiences of Asians and Whites. Thirteen questions were used to elicit reports about specific aspects of care and two questions assessed overall care perceptions. This analysis of the CAHPS database included 769 providers and 266,327 respondents. Most surveys (98%) were administered by mail and the rest (2%) by phone. Only 0.5% of the surveys were administered in Spanish. The sample was 64% female, 89% White and 2% Asian, 39% 65 years or older, and 32% were high school graduates or less. Results A three-factor model was supported by categorical confirmatory factor analysis using weighted least squares with mean and variance adjustment: confirmatory fit index (CFI) = 0.99 and root mean squared error of approximation (RMSEA) = 0.03). A multi-group configural invariance model also fit the data well: (CFI = 0.993, RMSEA = 0.031). Regression models indicated that Asians reported worse access, lower scores on office staff courtesy and helpfulness and rating their doctors and were less likely to recommend their doctors to family/friends than did Whites. Conclusions Use of the CG-CAHPS Adult Visit Survey 1.0 to assess perceptions of care by Asians and Whites is supported. Quality improvement efforts are needed to address worse experiences of care among Asians in the United States.

Abstract Background Substantial investment has gone into research on the efficacy and effectiveness of pharmaceutical and nonpharmacologic interventions for chronic pain. However, synthesizing this extensive literature is challenging because of differences in the outcome measures used in studies of similar or competing interventions. The absence of a common metric makes it difficult to replicate findings, pool data from multiple studies, resolve conflicting conclusions, or reach consensus when interpreting findings. Methods This study has a seven-member Advisory Council of chronic pain experts. Preliminary analyses will be performed on data from several large existing datasets; intermediate analyses will be performed using primary data collected from Amazon’s Mechanical Turk (MTurk); and cross-validation will use primary data collected from a nationally-representative, probability-based panel. Target sample size for both primary datasets is 1500. The three study aims are as follows: Aim 1 will develop and evaluate links between the 29-item Patient-Reported Outcomes Measurement Information System (PROMIS®-29) and legacy measures used for chronic pain such as the Roland-Morris Disability Questionnaire (RMDQ) and the Oswestry Disability Index (ODI). We will assess the best method of score linking and create crosswalk tables. Aim 2 will evaluate and refine the Impact Stratification Score (ISS) based on 9 PROMIS-29 items and proposed by the NIH Research Task Force on chronic low back pain. We will evaluate the ISS in terms of other indicators of condition severity and patient prognosis and outcomes and identify cut-points to stratify chronic pain patients into subgroups. Aim 3 will evaluate the strengths and limitations of MTurk as a data collection platform for estimating chronic pain by comparing its data to other data sources. Discussion The accomplishment of Aims 1 and 2 will allow direct comparison of results across past and future studies of chronic pain. These comparisons will help us to understand different results from seemingly similar studies, and to determine the relative effectiveness of all pharmaceutical and nonpharmacologic interventions for chronic pain across different trials. Aim 3 findings will provide valuable information to researchers about the pros and cons of using the MTurk platform for research-based data collection. Trial registration ClinicalTrials.gov: NCT04426812 ; June 10, 2020.

Abstract Objectives To develop computerized adaptive testing (CAT) and short forms of self‐report oral health measures that are predictive of both the children's oral health status index (COHSI) and the children's oral health referral recommendation (COHRR) scales, for children and adolescents, ages 8–17. Material and methods Using final item calibration parameters (discrimination and difficulty parameters) from the item response theory analysis, we performed post hoc CAT simulation. Items most frequently administered in the simulation were incorporated for possible inclusion in final oral health assessment toolkits, to select the best performing eight items for COHSI and COHRR. Results Two previously identified unidimensional sets of self‐report items consisting of 19 items for the COHSI and 22 items for the COHRR were administered through CAT resulting in eight‐item short forms for both the COHSI and COHRR. Correlations between the simulated CAT scores and the full item bank representing the latent trait are r = .94 for COHSI and r = .96 for COHRR, respectively, which demonstrated high reliability of the CAT and short form. Conclusions Using established rigorous measurement development standards, the CAT and corresponding eight‐item short form items for COHSI and COHRR were developed to assess the oral health status of children and adolescents, ages 8–17. These measures demonstrated good psychometric properties and can have clinical utility in oral health screening and evaluation and clinical referral recommendations.

The National Children's Study (NCS) statistics and item response theory group was tasked with promoting the quality of study measures and analysis. This paper provides an overview of six measurement and statistical considerations for the NCS: (1) Conceptual and Measurement Model; (2) Reliability; (3) Validity; (4) Measurement Invariance; (5) Interpretability of Scores; and (6) Burden of administration. The guidance was based primarily on recommendations of the International Society of Quality of Life Research.

Abstract Background End stage kidney disease and hemodialysis dependence are associated with impairments in health-related quality of life (HRQOL), which may be related to vascular access (VA). Few HRQOL measures are VA-specific and none differentiate HRQOL impact by VA type. We developed a VA-targeted HRQOL measure to distinguish the impact of fistulas, grafts and catheters. Methods We created an initial item pool based on literature review and then conducted focus groups at 4 US sites with 37 adults and interviews with nine dialysis clinicians about VA’s impact on HRQOL. We then drafted the Hemodialysis Access-Related Quality of Life (HARQ) measure and cognitively tested it with 17 hemodialysis patients. Focus group and cognitive interview participants were diverse in age, gender, years on dialysis, and VA. Results We identified six domains for the HARQ: symptoms, physical functioning, emotional impacts, social and role functioning, sleep, and care-related burdens. Cognitive interviews indicated that items were easily understood and supported content validity. Attributing HRQOL impact to VA as opposed to other hemodialysis burden was challenging for some items. Some items were dropped that were considered redundant by patients, limitations while dressing was added, and reference to VA-specific impact was included for each item. The average Flesch-Kincaid reading grade level for the revised 47-item HARQ was 5.3. Conclusions The HARQ features VA-specific content not addressed in other HRQOL measures, making it ideal for comparisons of different VA types and new VA technologies. The psychometric properties of the HARQ will be evaluated in future research.

Abstract Background Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease characterized by airflow obstruction that leads to shortness of breath and substantial negative impacts on health-related quality of life (HRQL). The course of COPD includes periodic acute exacerbations that require changes in treatment and/or hospitalizations. This study was designed to examine the responsiveness of Patient-Reported Outcomes Measurement Information System® (PROMIS®) measures to changes associated with COPD exacerbation recovery. Methods A longitudinal analysis using mixed-effects models was conducted of people who were enrolled while stable (n = 100) and those who experienced an acute exacerbation (n = 85). PROMIS (physical function, pain interference, pain behavior, fatigue, anxiety, depression, anger, social roles, discretionary social activities, Global Health, dyspnea severity and dyspnea functional limitations) and COPD-targeted HRQL measures were completed at baseline and at 12 weeks. Results We administered PROMIS measures using computer adaptive testing (CAT), followed by administration of any remaining short form (SF) items that had not yet been administered by CAT. Examination of the difference between group differences from baseline to 12 weeks in the stable and exacerbation groups revealed that the exacerbation group changed (improved) significantly more than the stable group in anxiety (p

Abstract Aim To investigate the meaning of support groups and the features of these groups that African American (AA) women view as improving adherence to high blood pressure (HBP) treatment. The study generated a conceptual model to illuminate features of these groups that influence adherence of AA women to HBP treatment. Design Qualitative research. Methods Used focus groups and open‐ended questions to obtain the views of 26 eligible AA women, recruited from South Los Angeles. Line‐by‐line review and coding of interview transcripts were done. The feedback was used to specify a conceptual model depicting the meaning of support groups. The Consolidated Criteria for the Reporting of Qualitative Research guidelines were used. Results The conceptual model depicts the meaning of support groups as information giving/knowledge sharing, emotional or psychological support, instrumental support and coaching, and facilitators and barriers to joining support groups and factors for consideration in forming these groups.

Patient-centered medical home (PCMH) has spurred primary care reform and improvements in patient care quality. Very little is known about the differences practices implement during PCMH transformation. We examined 105 primary care practice leader experiences during PCMH transformation, asking in semi-structured interviews about the changes they targeted. We used content analysis to classify these PCMH changes and examined how they aligned with what is measured on PCMH-recommended patient experience surveys. During PMCH transformation, practices most commonly targeted changes in care coordination (30%), access to care (25%), and provider communication (24%). Reported areas of PCMH transformation were measured by Clinician & Group Consumer Assessment of Healthcare Providers and Systems (CAHPS), PCMH CAHPS, or supplemental CAHPS survey items, including team-based care (35%), providing more services on site (28%), care management (22%), patient-centered culture (18%), and chronic condition health education (13%). Many PCMH changes are captured by CAHPS patient experience items; some are not. For some uncaptured areas, patients are not the best source of information. To provide practice leaders information they need for PCMH transformation, CAHPS items need to measure care management to support medical and chronic conditions, and chronic condition health education.

Background: Musculoskeletal disorders are the second leading cause of disability worldwide. Objective: Examine experiences of chiropractic patients in the United States with chronic low back or neck pain. Method: Observational study of 1853 chronic low back pain and neck pain patients (74% female) who completed an online questionnaire at the 3-month follow-up that included Consumer Assessment of Healthcare Providers and Systems (CAHPS) items assessing their experiences with care. Results: We found similar reports of communication for the chiropractic sample and patients in the 2016 CAHPS National Database, but 85% in the database versus 79% in the chiropractic sample gave the most positive response to the time spent with provider item. More patients in the CAHPS database rated their provider at the top of the scale (8 percentage points). More chiropractic patients reported always getting answers to questions the same day (16 percentage points) and always being seen within 15 minutes of their appointment time (29 percentage points). Conclusions: The positive experiences of patients with chronic back and neck pain are supportive of their use of chiropractic care.

Abstract Background Parents’ perceptions of their 8–17-year-old children’s oral health status were assessed using a sample from diverse dental clinics in Greater Los Angeles County to identify constructs for a survey instrument. Methods Focus groups with 29 parents or guardians were conducted to identify themes that informed development of survey items. The draft items were administered to a different group of 32 parents or guardians in cognitive interviews, and revised for subsequent field-testing. Results Thematic and narrative analyses were performed after the focus groups and key lay-oriented dimensions were uncovered, notably the relationship between oral health, systemic health and the life course. In the cognitive interviews, parents entered multiple responses to questions related to the look of their child’s teeth, and their overall perception of tooth color. Parents also assessed their child’s fear or discomfort with the dental experience, and other social and psychological concerns related to oral health status. The temporal dimensions of certain items were specified; for example, oral pain and mood items were revised to include duration of the symptom or mood state. As parents tended to confuse oral health maintenance and prevention, these two related concepts were separated into two items. Based on the qualitative work, we revised items in preparation for a field test. Conclusions As a PRO measurement study, qualitative research informed a field test survey to assess factors associated with oral health status and the individual’s perceptions and subjective views of these constructs for eventual item development for epidemiological and clinical use.

Abstract A recent article in the journal reported analyses of KDQOL-36™ survey data collected from 240,343 adults (330,412 surveys) dialyzed at a large dialysis organization in the United States during 2014–2016. The authors concluded that the KDQOL-36™ Symptoms and Problems of Kidney Disease scale had the highest mean score of the KDQOL-36™ scales. We note that this inference was erroneous because the scales are not scored on the same numeric scale. In addition, the authors found that responses to a general health perceptions item (“In general, would you say your health is excellent, very good, good, fair, or poor”) was not significantly associated with any of the 5 KDQOL-36 scale scores. In contrast, we find significant and noteworthy correlations in two other datasets. These analytic issues call into question the accuracy and validity of the conclusions of this paper.

Background: Dental caries is the most common chronic childhood infectious disease and is a serious public health problem affecting both developing and industrialized countries, yet it is preventable in most cases. This study evaluated the potential of screening for dental caries among children using a machine learning algorithm applied to parent perceptions of their child’s oral health assessed by survey. Methods: The sample consisted of 182 parents/caregivers and their children 2–7 years of age living in Los Angeles County. Random forest (a machine learning algorithm) was used to identify survey items that were predictors of active caries and caries experience. We applied a three-fold cross-validation method. A threshold was determined by maximizing the sum of sensitivity and specificity conditional on the sensitivity of at least 70%. The importance of survey items to classifying active caries and caries experience was measured using mean decreased Gini (MDG) and mean decreased accuracy (MDA) coefficients. Results: Survey items that were strong predictors of active caries included parent’s age (MDG = 0.84; MDA = 1.97), unmet needs (MDG = 0.71; MDA = 2.06) and the child being African American (MDG = 0.38; MDA = 1.92). Survey items that were strong predictors of caries experience included parent’s age (MDG = 2.97; MDA = 4.74), child had an oral health problem in the past 12 months (MDG = 2.20; MDA = 4.04) and child had a tooth that hurt (MDG = 1.65; MDA = 3.84). Conclusion: Our findings demonstrate the potential of screening for active caries and caries experience among children using surveys answered by their parents.

Abstract Background Blepharitis is an ocular surface disease and chronic ophthalmic condition. This paper reports on the development of psychometric evaluation of a patient-reported measure of blepharitis symptoms. Methods Self-reports of 13 blepharitis symptoms collected in a Phase 3 multi-site, randomized, double-masked, 4-arm parallel group, clinical trial of 907 individuals with blepharitis (mean age = 62, range: 19–93; 57% female) were analyzed. Symptoms asked about were: eyes that itch; eyes that burn; eyelids feel heavy or puffy; feel like something is in your eye; dry eyes; gritty eyes; irritated eyes; eyes that tear or water; crusty eyes; flaking from your eyelids; eyelids that are stuck together; red eyes or eyelids; and debris like pieces of skin or dandruff in your eyes. Results Categorical factor analyses provided support for two multi-item symptom scales: Irritation (9 items, alpha = 0.88) and Debris (4 items, alpha = 0.85). Spearman-rank order correlations of the Irritation and Debris scales with the Ocular Surface Disease total score were 0.63 and 0.41, respectively (p’s 0.05), and irritation (r = 0.47, p

Abstract Patient reported measures (PRMs), including patient-reported outcomes, play a critical role in dialysis care. The usage of PRMs is extensive in dialysis clinics. While there are excellent PRMs to choose from, and their implementation as part of quality improvement and performance monitoring is extensive, there are still methodological challenges to be addressed. In this paper, we identify key methodological concerns around use of PRMs in dialysis centers in the United States and make recommendations for improving the use of PRMs in dialysis related to Selection of PRMs, Mode of Administration, and Support for PRM Use. These recommendations include: (1) Continue the use of Kidney Disease Quality of Life 36-item survey (KDQOL™-36) for dialysis centers’ internal quality improvement activities and the In-Center Hemodialysis Consumer Assessment of Health Care Providers and Systems (ICH-CAHPS survey®) for public dialysis center performance monitoring, but promote efforts to modify these instruments by incorporating PROMIS general health items (KDQOL-36) and reducing the length of the ICH-CAHPS. (2) Adopt a PRM of whether dialysis patients have been informed about all dialysis and transplant options. (3) Evaluate equivalence between electronic and paper versions of PRMs prior to widespread use of electronic administration. (4) Explore reimbursement of costs of PRM administration by the Centers for Medicare and Medicaid Services and kidney organizations. (5) Continue development of provider trainings in PRM administration and interpretation. These recommendations will help dialysis care decision-makers, clinicians, and applied researchers take the next steps toward enhancing PRM use in dialysis.

Abstract Background Self-reports of health provide useful information about function and well-being that can improve communication between patients and clinicians. Global health items provide summary information that are predictive of health care utilization and mortality. There is a need for parsimonious global health scales for use in large sample surveys. This study evaluates the reliability and validity of brief measures of global physical health and mental health in the Patient Reported Outcomes Measurement and Information System (PROMIS®) project. Methods A total of 21,133 persons included in the PROMIS development sample: 52% female; 82% White, 9% Black, 9% Hispanic; median age of 50 years. We identified two global physical health items (GPH-2) and two global mental health items (GMH-2) with highest discrimination parameters and compared their reliabilities and construct validity to that of the original 4-item scales (GPH-4 and GMH-4) and a single global health item (Global01). Results Internal consistency reliability was 0.73 for the GPH-2 (versus 0.81 for the GPH-4) and 0.81 for the GMH-2 (versus 0.86 for the GMH-4). Marginal reliabilities were 0.55 for Global01, 0.70 for GPH-2, 0.79 for GPH-4, 0.80 for GMH-2, and 0.86 for GMH-4. The product-moment correlation between the GPH-2 and GPH-4 was 0.94 and between GMH-2 and GMH-4 was 0.97. The 2-item and 4-item versions of the scales had similar correlations with PROMIS domain scores, the EQ-5D-3L and comorbidities, but the 4-item scales were more strongly correlated with these measures. Conclusions Adding a single item to a large cross-sectional population survey can cost as much as $100,000. The 2-item variants of the PROMIS global health scales reduce the cost of use on national surveys by 50%, a substantial cost savings. These briefer scales are also more practical for use in clinical practice. The 2-item versions of the PROMIS global health scales display adequate reliability for group comparisons and their associations with other indicators of health are similar to that of the original 4-item scales. The briefer scales are psychometrically sound and reduce burden of survey administration.